This Is MS Multiple Sclerosis Community: Knowledge & Support

I haven't been here much in the past year. A combination of enjoying life and the loss of a lot of old posters on this board. There is a lot of research being discussed and that is great, but I'm looking for a more personal experience. I am curious about how those treated are feeling. I'm hoping to hear about the status of your MS. Has it changed? I hope to hear a few responses!!

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

hi magoo,

glad you are doing well. i thought you would get more responses. i could never forget magoo-you were like our ccsvi poster girl. having such good results and shareing your journey. for myself being treated aug. 2, 2010 i had no positive response and coming out of angio.with a numb leg and i never ever had numbness and it did not go away it has worsened. yet, having a doppler dec. 31 they say i have flow. but, yet i have gone down hill faster since the procedure than i ever did since this all started. i'm glad they are doing research. i wonder very much about the veins the angioplasty passed through that the standard doppler doesn't check.

anyway, i wish you continued improvement and many many yrs. of enjoying life.

kinda getting to be like a ghost town around here at times.

My MS is worse. I´m too weak to type more.
Erika

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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

Hi Magoo. Your early posts here on TIMS were very inspirational.

My wife had the procedure 13 months ago. She had moderate improvements in balance and major improvements in fatigue. The biggest improvement was with her recurring neuropathic pain in her left arm. This sever pain has stumped numerous neurologists and pain specialists over the past 5 years. She had tried dozens of different types of drugs as well as TENS, acupuncture, etc. After the angioplasty the pain disappeared for 2 months, which was fantastic. Needless to say, we were very disappointed when it returned.

After the 2 months of improvements my courageous wife has continued to decline at the same rate that she did before the procedure. The only improvement that has remained is that she still does not suffer from fatigue like she did before the procedure. We are thankful for that.

We are happy that we did it. We are tempted to do it again but there has been no advancements in the ability to make the improvements last. I know the procedure can produce wonderful results but they seldom last more than a few months. Then there are the few people that seem to retain their improvements. That gives us hope.

Bruce.

I quess my wife had best possible effect with procedure, now 1,5 yrs ago. After procedure it was a bit up-down with symptoms, but about 3 weeks everything changed to better: fatique, balance issues, heat problem, "heavy legs", weakness in right side vanished and she began to enjoy exercising again. First walking, then jogging, and last year lots of weight training and spinning. Also dietary things have been important. Cant prove it, but I guess that healthy lifestyle has been important with her long lasting effect with angioplasty.

well magoo,

i believe all in all, and now going for my third treatment, this time at Synergy in calif. with Dr. Arata, as I too believe it's all about the valves, i have had awesome to no changes in many of my symptoms - the most positive have been:
purple feet are gone, they're pinky now; ice cold hand is still problematic, but controllable as I ca get it to warm up quicker; foggy head is gone; headaches almost gone, slurred speech only once in awhile; spasms gone; bladder stream stronger.

i kept a record from my 1st procedure, RIJV angio'd, which gave me such incredible improvements for 3 weeks i returned to Dr Simka in Poland and got a stent, with most of my improvements not returning. Yet, having just reviewed my old record, I haven't done that bad...

what am i hoping for now?

I now know with PPMS I should be grateful for any changes, so, whatever happens towards the positive is a good thing. this time they are going to do my LIJV and my Azygos veins and tear the valves, so, I am extremely positive whatever the improvements are, because, i believe good blood flow is the whole purpose that gives us half a chance of a better life!

During this time I also went on LDN, and take buckets of vitties.......

best to all this year! thanks Magoo, and all who paved the way!

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PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia

I was waiting to see what other responses we'd get, but here's mine: 11 months after first procedure, 6 months after second procedure. Improvements in cogfog, fatigue, vision, colors, bladder, mild foot drop, balance, depth perception, swallowing water, sweating, heat intolerance, appetite, numbness.

On any given day, I could tell you what I'm doing now that I couldn't have done before my procedures. Today I took my son to the Children's Museum, which I couldn't have done on my own before because when (not if) I gave out in sudden fatigue, I wouldn't have been safe to drive us home.

My partner, Emma, suffers similar neuropathic pain in her left forearm, hand and left foot and calf.

We have found a dental appliance correcting her jaw misalignment is starting to arrest this (see th threads on Dr Amir's work). On the days it doesn't or the pain become too much, then 2mg tablets of valium help tremendously used in conjuction with medicated self adhesive pads (versatis).

In answer to the initial posting, Emma reacted well to the initial procedure and had a raft of improvements, particularly eyesight, fatigue, gait, neuralgic pain, heat/temperature intolerance and cold hand/feet.

Over the next 12 months these all gradually regressed to pre procedure levels except eyesight, which held some improvement.

It bought Emma a year or so. We are now starting off down another path of treatment addressing jaw misalignment and upper cervical spine misalignment. Once that has been completed we may address CCSVI once again as it's progressed quite a bit since Emma's treatment in 2010.

Hi Magoo,

after the treatment, I think I am still sick, I just changed areas - from neurological to cardio-vascular patient.
I had the procedure in June 2010, I had 3 relapses or mild exacerbations in November, January and April (November and April are the typical ones), but the last two were rather mild, I was active all the time. Actually, this last November was the first one without any problems (I was like WOOOOOW). And a few days ago my mum collapsed out of the blue, she is OK now thank god, and I was with her all the time. Basically, if I was pre-CCSVI, with that amount of stress, I believe that I would have had one of my worst relapses: vertigo, nosea and vomitting for at least 2 weeks plus stiffness.
Haven't had any since April, I felt a few symptoms 2-3 times, but only for a couple of hours, everything went back to normal afterwards. I realized that some of the things that I used to feel are still going on, like: dizziness when not hydrated, low blood pressure, poor balance at sudden change of head position sometimes, going from cold into hot and vice versa makes me uncomfortable...and I presume that these are symptoms of a cardio-vascular patient. Maybe switch forums. ) Kidding, I just hope everything stays the same with me and wish everybody the best.

nasti

Hi Magoo,
I was treated first in July 2010 and have held onto most gains. No more cane or scooter or MS drugs (Steroids). Good bladder control. no more foot drop. can do arts and crafts. can use chopsticks again! I still have problems with azygos (webbed, twisted) may go for stent eventually to try to get rid of severe "hug" which still keeps me pretty restricted. But I am stable so I am waiting for better stent technology first!
Thanks for askin'
Kind Regards

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I have been MSsooter but need to change my name after libration. Don't use a scooter anymore! I am LaFemmeMSketeer!

I'm doing fantastic. ALL symptoms gone. I have gone from not being able to work ---------to working FULL TIME!! without fatigue or tiredness. It's nice to experience 'normal' people tiredness for once instead of lassitude.

I follow Terry Wahls diet (hard but well worth it) and I crossfit to maintain fitness. It's hard work, but at the end of the day we will live longer than the 'normals'.

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... if it's going to be, it's up to me ...

thanks for coming on, Rhonda!!
(I also miss everyone and our daily discussions...but time's have changed.)
I'm SO glad to know you're doing well.
From running the CCSVI in MS page on FB, I've noticed that the people who are treated earlier in their disease (before too many disabilities accrue), who are treated correctly and given aftercare (and have malformations corrected) and who modify their lifestyle--by combining a healthy diet, stress reduction and exercise--tend to be doing quite well after venoplasty. As Lady Doe says, this can be "hard"--but the rewards are worth it. Dr. Zamboni's wife Elena did this, just as Ernst's wife, she works out at the gym--and she's doing really well now, 5 years later.

That would also be Jeff, now almost 3 years after venoplasty, and 4 years since starting the Endothelial Health program. He's working full days, traveling, biking, hiking, no MS progression or new lesions, reversal of gray matter atrophy, no more heat intolerence, no more crippling fatigue, no more spasms, much better bladder. He sleeps well, dreams at night again, wakes up refreshed and in a better mood.

We've learned that it's not just a matter of fixing a venous malformation and going home. There's so much more needed...physical therapy, nutritional counseling, support and follow up. I hope the future brings that for everyone....
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I guess I can attest to part of that. I have yet to be shown that all these symptoms are treatable. I am in a quite slow mode which does include as much exercise as I can manage.

I am trying out a Walk-Aide with my walker but the problem seems to be more a logistics thing. So I walk faster with the Walk-Aide but it's still not the same when I can't motor around and shop, which seems to be the big thing here in Snowsville. I am going to the gym when I can, but it's a bit weird for me with all the he-men and what my therapist Triana calls Barbies.

You might think, hearing that, that I am still doing well, but I am backsliding. I got a cut in a fall in the summer. Recumbent trike, ravine, very brush-filled area and an upside-down backwards tumble when I lost my chain going uphill and didn't brake soon enough. Bonked helmeted head on a steel drainage culvert that was at the bottom. Helmet worked. Had a minor cut that bloomed a bit, and after antibiotics and a lot of waiting, only healed up fully this past Christmas. I credit DiosVein, health-supplement version of Daflon-500. It lived up to its reputation, on my feet.

Kirsty Duncan said I looked and sounded better and so did everybody else, but I sound bad again now, due to halting speech. Hadn't had it since before angioplasty (1.5 years ago) but it's back. I go quite a bit slower than after angioplasty but I'm still ahead on account of the Walk-Aide. The worst thing that happened to me in my life was having my drivers' license suspended, as now I'm completely house- (sometimes chair-with-no-wheels-) bound. Still trying to entertain myself on the piano, but that has slowed down too. I would say that my benefits peaked at around six months, and some didn't last. I think I'm still ahead a little, but I can't complain about the year I had.

The worst problem is probably depression. The program I need might have to include something for that.

I think I need it again occasionally, but I'm still off the regular baclofen. That's good because it was making my bladder worse. I was thinking I would have to go back on it but since my infection cleared, I haven't had a bad night like I had in summer, with spasms.

Lots of other little boring details, but to summarize, 6 months really good, then a slow decline. I think it was a remission, and us SP"MS"ers aren't supposed to get those.

I would like to motorize my trike, but I think a motorized wheelchair is probably more realistic. I am very sad reading about Erica. Didn't get that song made for her yet. I wrote a song, though, and a neighbor from 2 doors down has millions of guitars and a recording studio in his basement. He did some work on my song, and it's coming to life slowly.

I'm really happy to hear you have been doing so well.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Good to hear Jeff is doing so well. Has he also been monitored (ie showed ) his neurologist?